Hello,

I am interested in books on CP.

I've done some looking and I see plenty of books about children, but not much that acknowledges that we grow up :)

I also see a lot of professional books.? the problem with this is that my type is ataxic, but it's an unusual kind of ataxic.? I was diagnosed as a teenager.? however, as an adult I have had other doctors be skeptical.? 

that is b/c I have what looks like normal muscle tone when I am resting and for the first - about two minutes of doing an activity.? and then my muscle strength falls off a cliff.? my muscles are very weak.

I have muscle spasms/tremors, difficulty with a lot of motor activities and etc.? also I feel shaky often.? I get tremors/spasms in my stomach/midsection.? I also have the difficulty with depth perception.? When I was 15, I was told damage to the cerebellum caused this.? I have visual difficulties as well.

I have a very supportive husband and I work part-time.? they are very supportive at work.

the doctors decided that I was basically ataxic, but an unusual variation on it, where I had most of the symptoms but not all of them.? I also have other symptoms like spasticity and etc. at times.


the reason I'm saying all this is that I'm almost 40 and am noticing some effects from aging, similar to what I hear other people talking about.? more immobility and etc.

and I would like to do PT and/or OT.


so - two questions

1.? since I have an unusual type of CP, how do I best find a doctor who has an open mind about unusual presentations so I can get good PT/OT recommendations?

I have actually encountered only one skeptical doctor and he was an orthopedist who attributed my problems to being overweight.? I really don't think that's the case b/c of what I have noticed, and what I was told when I was 15.

I've been told that seeing a physiatrist is better than seeing a neurologist.? does that sound like that makes sense?

and

2) any recommendations for books about CP that are not medical, and are not about children, I would appreciate.? particularly if they are written by someone with CP.


thanks


Mary Katherine






 


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